punched again

God, God, save me! I'm in over my head, Quicksand under me, swamp water over me; I'm going down for the third time. I'm hoarse from calling for help, bleary-eyed from searching the sky for God.... And me? I pray. God, it's time for a break! God, answer in love! Answer with your sure salvation! Rescue me from the swamp, Don't let me go under for good, pull me out of the clutch of the enemy; this whirlpool is sucking me down.... Now answer me, God, because you love me; let me see your great mercy full face.

Psalm 69 (The Message)

I feel like a punching bag sometimes. I know God is not punching me down or taking joy in my discouragement but on days like today, and in my postpartum hormones/ sleep deprived/ living far from home state of mind, I feel discouraged and like every time I start to get back up, to find humor in life, to relax, I get knocked down... again.

It's minor things really. And of course, the guilt that I shouldn't feel sad about minor things since Ellie is living then creeps in and I feel even more discouraged that I was feeling down in the first place.

We took Ellie to her pedi today for her two week checkup. She lost weight and was back down to her discharge weight of 6lbs, 9 oz. I began to sob. I have so enjoyed breastfeeding Ellie. It's so completely different from my experience with Will - so relaxing and peaceful and, quite honestly, almost like a drug in how it just lulls me to sleep. It's been so convenient that I can just feed her - wherever I am (even in public!) without having to also transport my syringe and sns contraptions that were required to feed Will along with a pump and bottle, etc. Feeding Will took an hour and a half - I have been so thankful to feed Ellie in thirty minutes and in a relaxed state! I have been pumping after my daytime feeds - mostly because I don't know any different since I was used to doing that for Will. I like to have extra milk on hand too - just in case. When Ellie was in the belly and doctors didn't know if she could survive, I had decided to pump for awhile after her birth and, if she didn't live, to donate my milk to a program that sends milk to Africa. Maybe this sounds bizarre but it felt like something proactive I could do to take care of another baby if I couldn't care for my Ellie. I hope to now accumulate enough milk to be able to still donate some - in Ellie's honor.

Anyway, when we realized today that she had lost weight, I was so discouraged. I felt knocked down. Again. I thought our feedings were going so well. I feel like such a failure. I wondered if the lack of growth was somehow related to her various health issues. The doctor had me feed her in his office and we weighed her again and she was up three ounces - to 6 lbs, 12 oz. (Thank goodness no one puts me on a scale after a meal - can you imagine???) She poops more than any kid I've ever met - probably 10-12 times a day - so we know she is getting milk. Between her poops and her weight gain in his office today after a feeding, we know that I am producing plenty of volume but perhaps I make skim milk this time. (Will's was more like half & half!) So, the doctor has me on a high fat diet of cashews & avocados to boost my calories in the milk and also on an herb that increases milk flow - fenugreek. Supposedly, I will start to smell like molasses soon thanks to the fenugreek. If you smell me coming, you'll know why I'll make you crave French toast.

I am so thankful that the pedi is supportive of my desire to breastfeed Ellie and is going with a natural approach to boost her calories first. We all agreed that Ellie likely burns more calories than most newborns simply due to the fact that she goes to doctors or therapies four times a week - & cries a lot during those sessions as she is taped & splinted & casted. Plus, every day at home, we are taking off her splints for exercises and she always screams for the removal and putting back on of the splints. I am certain that she is burning extra calories during these times. I go Friday again for another weight check and am hopeful.

It just felt so discouraging not to have a victory in her weight gain. I feel like the relaxing time that was our feedings now has a layer of stress for me. I worry about her not thriving.

Then, we did the PKU test - which I hate! I remember how horrible it was with Will - not having feet made it difficult to get enough blood. Ellie has the feet but the tape on her feet and legs made it difficult to get the enough blood. We ended up removing the tape (torture for her) and she had to get pricked twice (torture on us both.)

I lost count how many times I have told Ellie "I'm sorry" today with tears streaming down my face.

And the doctor checked her joints - causing her to howl in pain. I continued to sob.

And R left again today.

And I got more of Ellie's various specialists appointments made. My calendar is completely devoted to kids' doctors' appointments. Over the next month I have in my calendar: 3 times a week for Ellie for casting/splinting/therapy appointments, Ellie lowers appointment, (waiting on referral for her uppers appointment), Ellie geneticist, Ellie pedi, Ellie eye appointment, Ellie weight checks, & Will hand appointment. It's like I have become a medical coordinator. My history & Spanish degrees are not turning out so useful right now. My calendar overwhelms me.

And Will is acting out. He adores Ellie but is having some problems with me. When I got home from my post op checkup yesterday, he jumped up & down in excitement squealing that now I can hold him again. And I cried as I told him I can't hold him or pick him up for 4 more weeks. It is torture on me and I can imagine it doesn't make much sense to him that I hold Ellie but not him. He keeps asking if I still love him. He has tried some manipulative tactics too this week. The pedi today told me it was really important for me to spend some one on one time with Will. It's not enough for that time to come from daddy or grandparents. Of course, our pedi knows our situation and how difficult it is to find sufficient time and energy for me to give Will. It feels like a catch 22. If I give Ellie what she needs, I neglect Will. If I give him what he needs, I neglect her. I'm trying so hard but since I can't lift him, I can't really be alone with him to take him on a Mommy date. And my mornings feel consumed by Ellie's various appointments. I try to play with him on the floor but I admit to failing even at that - my mental energy is so low right now and half the time, by the time I get to the floor to play with him, it's time to feed Ells again. We do plan on doing some exploring at the hospital tomorrow while my Mom takes care of Ellie in therapy. Hopefully this will be some good one on one time and there will be plenty of people around if Will falls to pick him up since I can't.

I feel like I am failing my kiddos - not enough calories in my milk, torturing my baby girl every time I dress her or take her splints on and off, unable to hold my little boy or give him adequate energy and creativity and even consistency in routine.

I thought yesterday that I was doing really good with handling our "new normal." But, today, I don't know - I feel so discouraged and don't know how I will manage being 100% mommy to both of these precious kiddos.

But, I will try to find joy in doctor's orders to up my calorie intake & eat more "fats!" :) Pretty sure I'll never get that medical advice again!